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Wildly wondering about life

PRC and how it changed our life

It has been a few months since Claire got her voice and I think it is fair to say that it pretty much has changed our life. I have had contact with a few different families who are looking into a communication device for their daughter so I thought I would blog about why PRC has been as amazing as it has been. At the root of it all is one phase that Claire says around people that are new to her “This is my talker, it helps me speak.” Prentke Romich (PRC) was first recommended to me by somebody that I considered to be an adversary. Claire was 3 and had just started in the county autism preschool. The process of getting there had been comprised of one ridiculous evaluation after another, so I assumed that when the person came to do the assistive tech evaluation, she too would completely miss Claire. I told the lady that we were looking into MyTobi as there was an eye gaze controlled computer that was coming out that Claire could use as a communication device. While the lady didn’t completely get Claire, it turns out that she is some sort of genius with a PhD that teaches about this stuff at the college level. She gave me her card and really encouraged me to look into PRC. At the time PRC didn’t have a device that used eye gaze and I knew that it was all about access. A few short weeks after that PRC announced that they were releasing the EcoPoint to go with the Eco14. I still had no idea what this meant, everyone in the rett world (which is pretty much the whole universe from our perspective) was going with Dynavox and MyTobi. The Dynavox rep brought their eyegaze system and Claire was amused, but barely. Next in line was the MyTobi rep. Claire did great for the one hour that she had to play with it. There was a Christmas tree and she popped the ornaments. She also enjoyed an activity that had animals and the sounds that they made. Third up to bat was PRC, I still had no idea what the difference was between all of these, I was learning as we went. I was absolutely blown away by Claire’s response to the Eco. It was language, not games and she loved it! I have never had a doubt in my mind that Claire has had a language problem, she just couldn’t talk because Rett screwed up her body. The Eco was the perfect solution to it. It does just that, it helps her talk. PRC uses this really cool language system called Unity. I have to admit it was weird at first. The icon for “want” is that of a jailbird in black and white stripes looking at a wanted posted. It was much more abstract for me than it was for Claire. The coolest part about unity is how it is organized. It really capitalizes on motor planning. So once Claire gets the motor pattern for something, it is pretty easy for her to get to. It has given her access to so many weird things that I didn’t expect her to say. Like calling her sister dumb or announcing that her dad was leaving late when the phone rang during dinner. Having access to language, to whatever she wants to say and not just pages about topics that I think she would enjoy has really helped her to grow into the 5 year old that she is today. She is really normal. Sure she gets mad as hell because she hates the limitations of her body sometimes. But for the most part, the talker has helped her to deal with that and say what upsets her. I want to really encourage anyone out there who is looking into a talker with or without eyegaze to look into PRC and their products. They have had nothing short of absolutely fabulous tech support as I have had my programming challenges and a few quirks. Lastly, from a parent perspective, this is super low maintenance. If the best option for her would have been high maintenance, we would have gone with it if. But it is so nice that because it is a language system, there is really very little programming. Sure we put pictures of our family in it and she has all of her music on a songs page. But she really uses it as her talker, sometimes a keyboard if we want to type something she can do that to. It is not a game, although it has go fish, uno and a bunch of other fun stuff on there. It is her voice, her access to spoken language and it has changed our life, to say we are grateful for it seems like and understatement, but that is the best I can come up with.

The way Claire can communicate has already convinced me to look seriously into the PRC. She is amazing! I think Abby will like to tell jokes too. Right now, all we have is this-Logan: knock knockme: who's there?Logan: Wogan – followed by hysterical laughing

YES, YES, YES!! Colleen, this is it!! this is what our kiddos have been longing for, something to allow them to speak like the 5 year olds they are!! You put it into words brilliantly. I am so blessed to have met you and sweet Claire, I love that we share this!!! I Love that Annie bickers with her sister (I swear I'm about to put her in a time out if her stinkin' smile wasn't so big, and who puts a kid who can't walk, talk or use her hands into a time out?). Love it!! Thanks for posting and for always being right there when we have a question!!! LOVE!!